11.06.2011

My New Life

(Before this post begins, I would ask that you all remember my brother in law Michael as he recovers from what appears to have been a major heart attack. Please keep him in your prayers along with Erik's sister Cheri and their 3 children. My wonderful in-laws, who have lived with us for the last 8 months, left rather unexpectedly on Friday to make a 13 hour trip to go take care of Cheri's family. We would have been lost without the help and support of Erik's parents and will forever be indebted to them. They will be greatly missed, but we know that they have another obligation to fulfill. I can't imagine my precious nieces and nephew without their grandparents there to help them through this tough situation. )
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Happy Red Cup to You!

The Thanksgiving and Christmas seasons have officially been ushered in, thanks to the Starbucks red cup. The mere sight of the cup makes me warm inside. Its as if a rush of emotions fills my soul and I start to long for holiday dinners, Christmas trees and flannel pajamas.

Here is my first red cup. Thanks to the St. Jude Starbucks, I did some life organization yesterday during Lucy's school with the help of a Gingerbread Latte. And you know what, that red cup started 2 different conversations with 2 strangers. All inspired by the mystique of this red cup. It was wonderful.

Oh, and Christmas music. I am crazy about Christmas music. Yes, I have already started listening to it and I'm not embarrassed at all. In fact, this is my current favorite...

Why yes, this is Mr. Buble. And yes, he is bringing me a gift this Christmas. Listening to him sing "All I Want for Christmas" put me right in the holiday spirit. But I have to admit that the same spirit I am yearning for is the same spirit that has my mind spinning and me crying out for help. Ever the sentimental type, I have never been one to hold back at Christmas. Last year I put up 7 trees, decorated my mantle, stairwell and the outside of the house as well. I adorn light fixtures with garland, mirrors with lights and the tops of my tv cabinets with snow villages. (and last year I had a 3 month old to boot!)

But today, I can honestly say that the thought of decorating doesn't make me happy. In fact, it seems to be just one more burden that my heavy arms can't carry right now. We will put up our family tree and the girls' trees, but that's it this year. Its not that I don't want to do the other things, but I know I can't this year. My priorities lie somewhere much more important. Besides, who wants to spend an entire holiday season telling a 14-month old "NO" all day long. That just doesn't seem much fun to me at all!

I have to stop now and say that in no way is this post meant to be a pity party for myself or a veiled cry for help. It is merely a week's worth of thoughts poured onto a journal that I will cherish for the rest of my life. When this is all over I want to remember the good days and the bad.

This past week was a whirlwind of events and emotion. We were at St. Jude on Monday and Thursday. Wednesday we began our OT and PT sessions here in town. Friday was another PT day along with Lucy's first day of tutoring by one of our favorite adopted grandmothers. "Gram" has agreed to tutor Lucy 3 days a week and we are so very grateful. (in case you are wondering, Gram belongs to BFFs Hyatt and Gracen). I know anyone reading this is probably saying "Seriously? A tutor for Kindergarten?" I have no doubt that this mother with a Master's degree could handle Lucy's curriculum. I have found out, however, that a mother with a demanding 13 month old can not give Lucy the attention she needs while trying to keep Jack happy as well.

That, and my Christmas revelations, are just some of the many "things" I have figured out this week. I have learned that a 13 month old can not go to a PT or OT session, I have learned that my anxiety will rear its ugly head when I least need it to and I have learned that I have to ask for help. LOTS of help. I have also learned that I am not near as accepting of Lucy's cancer and what its done to her body as I should be. I have learned that it, in fact, does NOT get easier as time goes by. Being home has been the most difficult, stressful and depressive part of this whole journey.

I have learned that no matter how hard I try I can not be a full-time mom to my three kids, medical assistant to Lucy, chauffeur to all things extra-curricular, grocery shopper and chef. I can not help Ella with her homework, while playing Legos in the floor with Jack while trying to do leg stretches with Lucy to help her overcome her foot drop. I can not engage my girls in creative activities like cooking or holiday baking when Jack needs me to play outside with him. I can not do a load of laundry without feeling overwhelming guilt about Lucy sitting for yet another 30 minutes on the couch while I try to keep our house together but should really be doing an OT exercise with her or helping her with her phonics reading.

And for those of you who home school and do this sort of thing everyday, kudos to you. But this post isn't about you supermoms. It's about this mom who was removed from her life 8 months ago and thrown into a horrific, nightmare of a new life. And then, when I had finally learned how to live in that life, I was thrown back into my old life which resembles nothing of what my old life was. I went from having 2 self-sufficient children and a 4 month old to having a 5 year old who can't walk, a 14 month old who is testing his boundaries each and every day and a super sensitive 8 year old who needs just as much attention as the other two (but often doesn't get it.) Throw in an extreme type-A personality, guilt and anxiety on my part and you've got a party waiting to happen!

Needless to say, I'm struggling. I sat down one day this week and wrote out what a typical day needed to look like for me. I divided the day into morning, afternoon and evening. There was medicine to be assembled and taken, line dressing changes, PT, OT, school and home PT exercises that have to be done 3 times a day. I also have to get out with Lucy 2-3 times a day and force her to walk with her new walker. Then there is school for Ella, after school activities, volunteer opportunities at school so that my child knows I am engaged in her life, church on Wednesday and Sundays and homework. For Jack its just about finding quality time to sit in the floor and play or read books. In there somewhere I need to take care of groceries, pharmacy runs, twice weekly trips to St. Jude, dinner preparation, laundry and baths/showers for kids.

And the worst part is, anytime I am doing anything that does not involve Lucy I am riddled with guilt that I should be doing more for her. Either that or overcome with fear that I might be missing some quality time with her that I might one day regret. My mind is totally numb at times.

My mom has agreed to help me in the mornings and I have hired a college student to come 3 days a week in the afternoons to help out. Mom will be able to help with Jack while I focus on Lucy in the mornings and Hogan will help with Lucy in the afternoons while I focus on Jack and Ella. It's not perfect, but just knowing that I have this plan in place has helped me breathe just a little easier. I pray that Lucy will quickly become more mobile and will be able to go back to school at the first of the year. On November 4th, there was the most perfect entry in my Jesus Calling book. It said "Walk peacefully with Me through this day. You are wondering how you will cope with all that is expected of you. You must traverse this day like any other: one step at a time. Instead of mentally rehearsing how you will do this or that, keep your mind on My Presence and on taking the next step. The more demanding your day, the more help you can expect from Me...........I will give strength to you and bless you with Peace."

Wow! How likely was it that Sarah Young, the author, somehow knew me so well that she wrote this entry just for me? Not likely, I know. But I do know that God knew I would one day need to read it. I did read it and I wept. I wept tears of exhaustion and fatigue. I wept tears of anger and bitterness. I wept tears begging for mercy and grace. Now, I am re-reading it today with a open mind and heart. Trying to prepare myself for a lot of depending-on-God to get me through this week. Even with the extra help, it is going to be a hard one. Each day will present a new challenge and it is my task to learn how to handle it with dignity and grace. Some days I will succeed, many days I will fail. Either way, I will walk this road learning to lean on God and learning to ask for help from friends and family.

Thank you all for your continued to prayers for Lucy, me and our family. Lucy continues to grow a tiny bit stronger each day and is working really hard at eating. Some days are better than others, but she is at least holding her weight right now. She still tires very easily and requires a lot of rest. She works hard at OT and PT, but isn't always cooperative at home when I try to make her exercise or walk. I am having to walk a fine line between pushing her too hard and not pushing her enough. Its a tricky balance, but we are getting better at it every day. We hope that in 2 weeks her counts will stabilize so that Dr. W can pull her central line. Please pray that her body will pick up the production of white blood cells and that her ANC will rise. Last week her hemoglobin was 8 and her ANC was 300/400. The doctors are hesitant to give her any assistance in hopes that her body will start to do the work itself. Erik has Lucy at the hospital today, so we will have a better idea of how she is doing after lunch.

Here is Lucy with her new walker. I almost didn't post this due to how miserable she looks, but this is the look I get every time I make her do anything. It kills me to admit that my once aggressive, over achiever has become complacent and perfectly content to sit on the couch. I end up being the bad guy many times a day when I make her exercise or walk. Oh, she gets so mad at me. I know I have to do it, but knowing it doesn't make it any easier.

36 comments:

Hi Kate. I just found your blog. It touches me and hurts me to read of your story. Thank you for sharing, even the hard times. It keeps me going with my St. Jude fundraising to see how each of the dollars I earn can help a real life person who deserves it so much. Lucy, you, your family, and every wonderful person who helps you get through each day will be in my prayers. And my thoughts.

Kate, I am so in awe of your ability to keep things real. The testimony of your faith continues to inspire me. I'll keep praying for Lucy and your family, and begin praying for your brother-in-law and his family. As we move into Thanksgiving and the Christmas season, I'm sure you're overwhelmed with the new normal of your life (especially as "normal" is a moving target) while also being overwhelmed with blessings in the midst of challenges. Sometimes the words "I'm praying for you" are not enough and this is one of those times. So instead I'll say there are hundreds of fellow believers praying for you, praying with you; strangers in this world, but joined by our faith.

Can you appeal to the members of your church for assistance in shifts to help you with some of the tasks, including those with Lucy. What you describe is more than any mom could handle so don't be hard on yourself (I know, easy for me to say at a distance). I imagine that people in your church would sign up to help in every way imaginable from cooking to housecleaning to playing with Jack to helping out with Lucy.

Dear, sweet Kate, I know your plate is so very full right now, and that your thoughts and emotions can take over when you least expect it. You are aware, I know, of all of us out here who never, ever go a day without thinking of your family, and especially your precious baby girl Lucy. Prayers are never ending, and I hope, that what I am going to share with you, brings, if only briefly, a smile to your face and a warm feeling in your heart, as it did mine. (it also brought tears for me).I just returned yesterday, from a cruise on the Royal Caribbean ship, Explorer of the Seas. It is the first vacation I have had in 4 years, since my mother came to live with us, and since I lost my 4 month old granddaughter, Madelyn, my Dad, and brother, all in a period of 9 months, back in 2007.On Thursday, as we were cruising towards home, a group of us, along with a couple of the ships officers, walked the 12th deck 5 times around, a total of a mile, for the Make a Wish Foundation. Tee shirts were sold, that say "Wishes at Sea" on the front, and on the back, they say, "I helped grant a Wish". We were cheered and applauded by people looking up from the 11th deck around the pools. It was quite windy, which made it a tough walk, but my thoughts of Lucy, and how hard she tries to walk, made it easier, as tears streamed down my cheeks. I am proud to say, that in a half hours time, $1400.00 was raised, in the sale of the shirts, and they were on sale the next day also, making the amount even higher.I was one very proud Mom-Mom, to have helped this wonderful foundation, for these beautiful, precious children.God Bless, and please give Lucy an extra hug from me.

Aaaawww...I hate seeing Lucy that way! I'm sure you do, too. =( It must be very difficult to make your baby do the things that hurt her, but it's for her good. I'm praying that you and your family will be able to accept this big change that has come into your lives and the Lord will give you strength as you help Lucy fight this horrible battle! I've been praying for Lucy, you, and your family and will continue to do so! Praying for Lucy to be back to 100% SOOOOOOOOOOON!

Although the cross we bear is nowhere near as painful as yours I do feel the overwhelming "mother's guilt". I hope you can find some solace in the fact that you are not alone in that. I am happy you have gotten some extra hands to help. I am slowly accepting the fact that it is ok to ask for help. Thank you for sharing your story. Your family is beautiful and you are doing an amazing job!

Hi Kate, I can't believe you are doing this all.You are the best mom your kids could ask for. You are amazing and your family are in my prayers. It hurts to see Lucys picture and Im sure I would not have the strenght to force her.Keep your head up

I don't know how you keep all the balls in the air, Kate. Thank you for posting the November 4th entry from "Jesus Calling." I, too, need to read this entry everyday as my husband battles advanced lung cancer. Each day brings more and more demands. Between caring for him, doing everything at home, and working full time, I often feel overwhelmed. I can't even begin to imagine what you feel as you care for small children and deal with all that fighting cancer demands emotionally and physically.

As always, you and your family are in my thoughts and prayers. I will remember Michael and Cheri as well. May God hold you all close, comfort and strengthen you, and bring you through to victory.

You're right, you do need the help of your friends and family and even strangers who will become new friends. You cannot do this alone. Nobody expects you to. Sometimes people want to help, but they don't know how to ask, or they are afraid that maybe they'll say something wrong and so they don't ask at all. You may be surprised how eager people are to help, if you just ask. Ask and you shall receive... Don't be too hard on yourself. Remember to give yourself a break once in a while. You're doing the best you can. And that's more than enough. Praying for you and your family, including your brother-in-law.

I want to comment, but I don't know what to say. I don't know how you do it all and keep your head above water, except that you are doing "all things through Christ..." You are a real lesson in living. You bless, inspire and bring us to reality all at the same time. It is imperative you stay healthy which means you must have moments for yourself in the riddle of all that you have to do.I am reminded of the saying that "If God leads us to it, He will lead us through it." I believe He is doing this everyday in your life and you are proof that His promise to never leave us is true. Blessings and healing to sweet Lucy and all your family.

I stumbled across your blog somehow and have frequently checked back in often to read your story. Thank you so much for sharing the real story...good, bad, and the ugly. You and your family are in my prayers. :)

I am SO glad you have arranged for help. One person cannot do it all and your helpers will love getting to spend time with your precious family. Even though it seems impossible find a way to take even a half hour for yourself no matter how weird it feels. You need it to be able to give all you are being asked to give. Praying for your WHOLE family.

A day not too far down the road, when Lucy is running to keep up with Ella, and running away from Jack and his messy little hands she will have you to thank...I can imagine pushing her pulls at your heart strings, but one day you will see that smile again as she runs in the front yard and you will look back and be proud of yourself :)

I have read sense you weredx but never posted before. My son have rhabdomyosarcoma at 2 and is not 18 months post treatment. So I understand some of it. It does get better. With time. Remember it took untold months for the tumor to do its damage and 8 months of hard core treatment. Just like a pregnancy takes time to recover from so does treatment.

Even after 18 months zach and our family are not the same. We never will be. I am glad for some of the ways it changed us and hate other parts. I hate at now 4 1/2 he still is not potty trained. I hate all the doctor appts 3 hrs away. Granted now they are only evrEry 3 months but still...it is time away.

My heart and prayers go out for ya every night. I think you are an amazing, stronger than you think, wonderful mother. KNOW that MANY have your back in lifting you, Lucy and family up in prayerLoveMs Renee

Hi Kate, It is a tough walk and sometimes when you look at the whole, big picture it just becomes so overwhelming. One step at a time, girl. All of this will fit into your day and you will have more time than you thought. Enjoy each and every single moment doing what you need to do at that moment. It is hard to not stress out but you need to give it a go because those kids need you to be functioning and I know from experience, that one cannot function fully while you are stressed.

Praying for you all. Give each and every moment to Jesus, He will help you through this. You have a lot of people praying for you, I know I pray many times a day, as the Lord reminds me.

Awww, her little face says it all. Cancer sucks! Prayers continue for all of you. I have your thankyou postcard on my bulletin board at work and I pray for Lucy and think of you all every time I glance at it. Please take care.

Kate-You and Lucy are often the first ones who come to mind during my prayer time. I hear your heart in this post. I have 3 kids about the same age as yours (7, 4 and 18 months) and I struggle everyday to do it all. I can only imagine he added pressure you feel. I will continue to pray as God brings you to mind.

I love how you post the ups and downs. Life is not perfect - God didn't promise us perfect. He did promise to be there and I can see Him throughout this story. Keep posting everything including Lucy not looking so happy with the walker. She has a right to her downs too - the overachiever will be back one day. She will thank her God and parents for pushing her. Sending prayers for peace, strength, comfort, and wisdom.

Like others said, take one day at a time. When Lucy looks at you with that face, remember that by His grace, she is here to see today. In God's time, she will be strong again. It is hard to make peace sometimes with the fact that our demands and needs have little to do with His perfect timing. Maybe today you don't get it all fit in or right, but tomorrow is a new chance to go at it again. You have to give yourself time, just like Lucy (and Ella too) to adjust. You have to stop, take a breath, be able to say "That didn't work so well" and wipe the slate clean. I know myself, it was hard to do after my daughter's last surgery. Everything you do, you are doing with the weight of a huge, heavy, unseen burden of worry and sorrow on your back. It makes everything that much harder. Perhaps the lesson God wants you to learn here is to slow down. Don't rush through life or pack it so full of "extras" that you miss the beauty of simply being together.

Good Morning,I am praying for your brother in law and his family. I have been praying for you and your family. I am hoping this comment posts. I just want to encourage you. I was the child that needed daily exercises that caused pain. My family was faithful in doing them. I was allowed to express the pain, but I was not favored for it. I am now 44, I have 4 grown children and work full time in healthcare. I have Cerebral Palsy. I was also the parent of a premature twin. After her heart surgery she tried to catch up to her twin in development. One day I had to verbally push her to catch up to her siblings as she just wanted to stay by my side. I cried as she cried trying to catch up with them. But she caught up and will graduate HS May 2012 and plans to by a police officer. You can do this. I am rooting and praying for you.

As tears stream down my cheeks, my heart hurts for you. I know you are not throwing a pitty party, but indeed you are throwing us your needs, and as praying people, you are helping us know how to talk to God about you. You are carrying such a heavy cross right now, and at the same time your struggle is spreading the message that God is wanting you to share. He holds your heart and your life story in His palm and may none of this trial be in vain. May none of Lucy's precious life be in vain. You are glorifying Him amongst the thorns in your field, also known as your family who will reap the benefits of Christianity. You are doing a great job. I am also staying at home with my children. I have an 18 month old and a 3 year old. Being a "homemaker" is not all it's cracked up to be, but as your title says at the top, " As for me and my house, we will SERVE the Lord". That is what you are doing. You are serving Him each and every day as you "make your home". As to caring for sweet Lucy and the mixed emotions of "pushing her", don't you think that God pushes us from time to time? I do. I believe that our faith is strengthened when He pushes us which in turn causes us to lean on and trust Him. Although it must be easier said than done, a little love combined with a little encouraging push will bring her farther than you can probably imagine at this time. She will climb that mountain and reach the top in due time. Because of you and Eric, she will get there. And you will rally around her as she does so. And sweet Jack... is it trying or what?! I am unsure how you are even beginning to keep your plates spinning. I will say, however, that more than likely he will not remember this time. Not to say that he should be left out of the necessary needs, but do what you can do. Invest in Lucy's recovery and lean on others to help with Jack and Ella, alongside you and Eric. As a past teacher, I do believe that extra-curricular activities are important, however that doesn't mean that each and everyone is necessary to be beneficial. May your wisdom help you pick and choose. I also hope you and Eric can take a date night every now and then to continue investing in your marriage.

His yolk is easy, His burden is light. This is the lovely month of Thanksgiving. I can't help but be thankful for the doctors who have seen Lucy through this journey, and also for your transparent heart as you've shared your faith amongst your worries. I am certain that Lucy has brought so many to the Lord. Many who possibly hadn't spoken to Him in a very long time. Many who are now closer to Him as they've talked with Him about Lucy. That warms my heart.

Hang in there, sister. You are doing great! The next "ta-da" will be Lucy-girl walking on her own. Baby steps are ok. We (I) need to work on those during the day ourselves. Thank you for sharing your life and your love for your family who belongs to the Lord.

Lastly... Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

There is a song with these words... you can probably find it on youtube. It is a favorite of mine. :)

Hi, I have a little something that I would like to send to you that might help with that red cup addiction :) I am a starbucks addict myself this time of year. Don't see the address where things can be sent anymore. Can you repost it? I have never met you but think of your family often . I am a memphis native, transplanted to Colorado and know what a wonderful place St. Jude is. A wonderful place that I pray hard you will someday never have a reason to visit again. Happy early holidays to you and your family. May it be a very special, family focused, God focused time.

Ive been reading your blog for as long as I can remember. I have to comment that although Lucy has a less than happy face to be up and about with her walker, she looks SO much healthier. Her coloring is coming back and she really does look good! I will keep you all in my prayers as I always do!

I wasn't going to comment, I came back twice and decided that I needed too. You are super mom!!! You are doing a wonderful job, loving your children and putting them first in your life is amazing!!!I want to give you some perspective, I have spent the last two days panicing because my three year old has started to pee more then normal and have a lot of accidents...yep...this is what I have been panicking about. The tests the dr did have all come back negative, and more then likely he is just trying to get some attention away from his 17 month old baby sister (I spend most of my day trying to assure the other child that I love them no more or less then the other one) Back to my point...you and your family have been through childhood cancer, real pain and real illness! it will take a very long time for your "normal" life to be normal again. I pray for you all every day, though Lucy is on the top of my list, You as a mother and as a person all your own are on that list as well.

Oh Lucy...you are such a warrior. Keep up the great work Lucy!! You are doing great

Kate, it is no doubt you awesome parents and you have inherited those same qualities. Please let your BIL know that he is in my prayers.

I have followed your blog for over a couple of months and I have to say... I have laughed, cried and rallied at the updates. Your sweet Lucy is always in my prayers. Your family continues to be a "testimony" to so many of us. As mentioned above "there are many that are willing to help out" with the kids. Being a mom as well, I know we wear "many hats" and sometimes it's hard for us to admit "that we can't do it all'. It appears you have found some "wonderful help"! That is truly a blessing.

I am continually praying for Lucy's counts to remain good and your brother-in-law recovery.

Another poster commented that you are "the best mom that your kids could ask for". That is all that we can do. We are so lucky that our kids only have one experience of having a mom and that they have no one else to compare your love and service to. What I mean is that we CONSTANTLY compare ourselves to other moms and we always want to be like someone else that we know. Well, our kids only care that we love them, we are there for them, and that we support them. You are doing WAY more than they could ever imagine and for that You are the best mom that your kids could ask for and so much more. You are an amazing mother and Christian woman. I only hope my kids see as much in me as I see in you!!!! As always, thanks for sharing your life with us.

I've been following and praying since the beginning of this journey for your family. Continuing to pray that God would pour out His blessings, grace, and mercy all over you. I can relate to so much of what you said about being able to get everything done...and I don't have some of the difficult challenges you face each day. In my own understanding, being the planner I am, I want to figure it out in my way, fretting about how I'm going to do it...and then I remember I can't even begin to do any of it without God's help. I too read Jesus Calling, and Nov 4th was exactly what I needed to be reminded of...sometimes God grants me just the amount of strength and energy to get through that day...but that's really all I need...cause He will provide it again the next day if I just ask. Praying that He would meet your needs each day.

Hi Kate. I just found your blog, and what Karla called "mother's guilt" really resonated with me. I think that truly, none of us can do it alone. We only think that we can when we don't have any major challenges in our lives, and we aren't any better off for it .. we simply go on believing we ARE supposed to be able to do it all, and to do it all well, and I think our moods go up and down just as much. Up when we imagine we have it all together and are awesome megamoms, and have something to boast about ... and down when we realize we can't do it all and the people around us seem to be able to. I think we can sometimes go a long time on our own reserves and I think it's a GOOD sign for us when we reach the end of those reserves. That's when we reach out. I'm glad you are asking for help, and I hope you also schedule time for napping when someone else is there to help, because that's as important for your health (and your family) in the long run, as somehow managing to get enough help to be able to "do everything." I think we need more rest when we have major stressors, and yet we usually get less. And one secret: my kids are sharing things with me about the years when we had their sister with us and the past year spent trying to wade through grief, and the one thing that surprises me is this. While they do have some sadnesses to share and things they never felt they could admit before, because it seemed selfish and unspeakable, they also don't see me as having completely failed them. They did make sacrifices, but I hope they will grow into the kind of people who know that when it's called for, sacrificing for others is important and what we are created for. For sure there has been suffering, but they are deeper and better people for having gone through that part of their lives, and they definitely are not the worse for it in the final analysis. You can't be "on" for every one of them every single day, and I believe they will only remember that you poured yourself out for them ... but not that you had to take naps when someone else got the chance to spend quality time reading or doing homework with one of them. :)